I told my doctors my drug history. Yet they gave me opioids without counseling

It was roughly halfway into a Saturday evening flight from Miami to Boston when I began to wonder if I was going to survive the night. What had started as a sharp pain on the right side of my abdomen now felt as if my gut was being hacked at with a phalanx of rusty chisels. The only explanation I could think of was that my appendix had burst and I was dying of sepsis.

After we landed, I was taken by ambulance to the emergency room at Massachusetts General Hospital. Over the next hour or so, I received five separate injections totaling the equivalent of 29 milligrams of morphine. Sometime around 4 a.m., I learned that my appendix was fine; the cause of my suffering was a pair of kidney stones lodged in my ureter.

One of the stones was roughly twice as long as the ureter is wide, which meant it would require surgery — and the soonest that could occur was at the very end of the following day. I’d need to be injected with a lot more painkillers before then — and I’d likely be sent home with a prescription for more. That was something I’d been dreading for years.

advertisement

A dangerous scenario

I have had much good fortune in my life: I’m happily married with two wonderful, healthy children, and I have a stable and satisfying job. But the luckiest thing that ever happened to me was surviving a three-year addiction to heroin that included shared needles, multiple overdoses, and more than a dozen attempts at treatment. I kicked the habit in 1997, after a stint in a long-term rehab in Delray Beach, Fla., but I can’t point to any one reason why that worked when so many previous efforts had failed.

And while everyone’s demons, secrets, and temptations are unique, I’ve seen enough friends stumble after years of sobriety to know there is one chain of events that is especially dangerous: a surgical procedure followed by a round of medically necessary pain pills.

That doesn’t mean people in recovery should shun all prescriptions. The scientific literature is full of studies and commentaries highlighting a paradox in treating ex-addicts: Appropriate use of prescribed opioids can put them at a significant risk of relapse, but so too can inadequate pain management.

That’s why, throughout the course of my 43-hour stay at MGH at the end of April and into early May, I told everyone I could — from the ER doctor who informed me that I’d need surgery, to the anesthesiologist who prepped me for the procedure — that I was in recovery from a substance use disorder.

And while my doctors all said they were aware of the issue, it still felt as if no one was listening.

An apparent oversight

At around 7 p.m. on Monday night, about 30 hours after I’d arrived at MGH, a surgeon threaded a scope into my bladder and used a laser to break up the larger of my stones. Before I awoke, a stent was inserted into my ureter to help me expel the stone fragments that remained. The entire procedure took less than an hour.

As I recuperated, the surgeon checked in with my wife.

“You know he has a history of addiction?” she asked the surgeon.

The reply surprised her: “No, I did not.” There wasn’t time for more discussion: I was waking up and the surgeon had already had a longer-than-expected day. (When I asked my surgeon about this later, she told me that she had, in fact, reviewed my history with her entire team before the operation. “When I’m seeing patients [and their families] afterward, I don’t have the records in front of me,” she said. “I’m just making sure they’re OK.”)

A few minutes later, still groggy from anesthesia, I was handed a stack of seven prescriptions. One was for 20 pills of oxycodone at 5-milligram strength.

When my wife and I talked about this later, we were nonplussed. On the very first page of the seven-page report generated before my operation, “substance abuse” was listed under “past medical history.” Three pages later, the first sentence of the “assessment/plan” for my care began, “Briefly, this is a 44 y.o. male with a history of … substance abuse (in remission).”

Despite that, I got no counseling before I checked out of the hospital that night. No one talked to me about the risk of relapse — or how to guard against it. No one offered to advise me as I began taking the powerful painkillers I would need to get through the next few days.

Fortunately, I had a robust support network and had come up with a plan I was confident would keep me safe from relapse: My wife would have possession of the pills and would never give me more than two within a six-hour period. This was going to be a breeze.

Matt Ganem, a former addict, explains the excruciating process of opioid withdrawal.Alex Hogan/STAT

A national epidemic

The Food and Drug Administration approved OxyContin, a time-release formulation of oxycodone made by Purdue Pharma, in 1995. Over the next five years, Purdue more than doubled its sales staff and aggressively marketed the drug as a “first-line defense” against everything from musculoskeletal pain to pain after surgery. The company assured doctors and patients that OxyContin was less addictive than other pills. It wasn’t.

The marketing campaign worked: From 1997 to 2002, prescriptions of the drug for noncancer patients increased tenfold. Before long, Purdue was ringing up more than $1 billion in global sales each year. By that point, the United States was in the midst of a prescription opioid epidemic that continues to this day.

The result has been an eye-popping increase in more than just Purdue’s bottom line: In 1999, there were 4,000 deaths in the US attributed to prescription painkillers. By 2011, that figure was close to 14,000 — more than the number of overdose deaths from cocaine and heroin combined.

In 2014, the most recent year for which figures are available, the number of overdose deaths in the US had risen to 18,893.

That’s more than 50 people a day.

Over the past half decade, Massachusetts, like the rest of the country, has taken notice of the deadly toll of all forms of opioids, and for the past several years, MGH has been vocal about its work on “the front lines of the opioid epidemic.” That included creating Addiction Consult Teams, known as ACT, made up of internists, addiction specialists, social workers, and nurses to evaluate and recommend treatment.

Today, ACT is deployed in virtually every area of the hospital — except for the emergency department, where staffing constraints and a lack of certified addiction specialists present a challenge.

In any case, ACT wouldn’t have intervened in my case: It’s designed to help patients with active addictions — not those already in recovery.

A self-portrait taken by the author during his recent hospital stay.Courtesy Seth Mnookin

The pill count grows

On Tuesday morning, my wife filled my sundry prescriptions. I took three oxycodones for each of the next three days. At that point, I called my surgeon’s office and said I was going to run out of painkillers before the appointment to have my stent removed the following week. Later that day, I picked up a prescription for 10 more pills.

From Friday, the first day I had to be back at work, through the following Monday, I took four pills a day. By the following Tuesday, 10 days after I’d arrived in the ER, I was up to five a day.

At an appointment that afternoon, I learned that the reason I was still in so much pain was that I’d developed a bladder infection. I was given a prescription for Cipro along with a prescription for 10 more oxycodone pills — the third one I’d received in a little over a week.

In one sense, the fact that I was given multiple prescriptions was evidence that my surgeon was being careful about giving me opioids: Instead of starting me off giving me a single, week-long prescription, as is standard practice, I’d only been receiving enough pills to cover a couple of days at a time. What’s more, those three prescriptions only totaled 200 milligrams of oxycodone, and my rough calculations put that as the equivalent of somewhere between eight and 15 bags of heroin. When I was using, it wasn’t unheard of for me to consume that much in a single day.

And since MGH knew about my history, surely someone would have let me know if there was cause to be concerned.

On Thursday, I received more bad news: My infection hadn’t cleared. My surgeon was still willing to take out my stent, but stressed that if I developed a fever, or felt aches or chills, I should go immediately to the nearest ER: It meant the infection had likely spread to my kidney.

The removal did not go smoothly. (Suffice to say that when a doctor is pulling something out through your urethra, the words “it has a kink in it” are not ones you want to hear.) When it was done, I was in more pain than at any point since my kidney stones were initially diagnosed 12 days earlier.

As I lay on a gurney with a hot water bottle pressed against my groin, I was told I should be feeling better within a day.

Even so, if I really thought I needed it, my surgeon told me, I could have one more prescription for several days worth of oxycodone.

This time, I declined.

Pain and panic

I spent that night writhing on the couch in our family room. The pain in my bladder and kidney was, I’d been told, due to the “trauma” of the stent removal — but that didn’t explain why my nerve endings felt as if they’d been electrified. At 4 a.m., still unable to sleep, I began to irrationally panic that I’d poisoned myself by taking too much of a powerful, prescription anti-inflammatory drug.

The following day was even worse. I was both deeply exhausted — more exhausted than I remembered feeling in years — and unable to sit still. Despite having just made it through two weeks of some the worst pain of my adult life, I was despondent about making it through the next 24 hours. Lights seemed brighter and harsher than usual. I didn’t have a fever but my skin seemed to hurt.

Sign up to our Weekend Reads newsletter

It all felt vaguely familiar — but given the warning I’d received the day before, I thought it just meant my infection had spread. I was girding myself for another trip to the ER and another bout of bad news.

Then I got a text from a sober friend of mine who was checking up on me. (He’d had a years-long relapse after being given a prescription of hydrocodone, better known as Vicodin, following a dental procedure.)

When I described how I was feeling, he didn’t hesitate in his reply: “You don’t have a kidney infection,” he told me. “You’re in mild withdrawal.”

He was right: While two weeks of continuous use is quick to develop a physical dependence, it’s not unheard of, even in what doctors refer to as “opioid naïve” patients — and dependence can occur even more quickly in people with a history with opioids.

Once I realized that, I was simultaneously relieved and scared: Relieved that I hadn’t filled that fourth oxycodone prescription and scared that I had been caught so unawares.

The hell of addiction isn’t that you’re compelled to take a drug to make you feel euphoric — it’s that eventually, you need the drug just to feel physically stable and emotionally sane. I’d convinced myself that the fact that I hadn’t been getting high meant that I wasn’t at any risk, somehow forgetting that my years of addiction hadn’t been years of doped-up bliss; they’d been a never-ending struggle to feel normal again.

If I had filled that fourth prescription, would I have convinced myself that it made sense to just keep on going for a few more days — and then a few more days after that?

I was also angry.

I’d been treated at a hospital that reminds patients at every opportunity that it’s regularly rated the best in the country. Both my wife and I had spoken up about my history. Despite this, no one had talked to me about the risks of relapse or how best to manage and track my prescriptions.

There’d been no discussion of the proper way to stop using opioids and no warning about how I might feel once I did stop. And no one had checked up on me to make sure I hadn’t encountered any difficulties along the way.

When I asked MGH about my case, they put me in touch with my surgeon. She shared my frustration. “At the moment, we’re not getting a lot of guidance,” she said. “And the addiction specialists are few and far between. I think people are moving in the right direction, but it’s like anything — it’s going to take time.”

At present, MGH doesn’t have apolicy mandating discussions with patients about proper opioid use, although that is about to change: A task force is putting together best practices on prescribing pain medications, to be released later this month. Those will include hospital-wide guidelines that all patients be given information on the risks of opioids before receiving them.

There will also be guidelines on treating patients in recovery — something that Dr. Sarah Wakeman, one of the task force’s cochairs, acknowledges is needed.

“The person doing the prescribing really needs to screen for that,” she said, emphasizing that she had no knowledge of my specific case. “They should be very thoughtful, both in their own decision-making and also in the counseling they would offer that patient.”

A call for common sense

In March, Massachusetts Governor Charlie Baker fought back tears as he signed a law that put tighter restrictions on prescription opioids. Talking directly to families who have lost loved ones to overdoses, he said: “May today’s bill passage signal to you that the Commonwealth is listening and we will keep fighting for all of you.”

Some of the provisions will undoubtedly help; for instance, the law limits first-time opioid prescriptions to a seven-day supply and requires practitioners to check a database before prescribing certain drugs, to make sure the patients haven’t been going from doctor to doctor to stockpile opioids. Federal officials are working onprescription guidelines, too.

But as my case highlighted, other simple reforms are being ignored.

Why isn’t every patient who receives an opioid prescription given information on physical dependence, as the Massachusetts Medical Society recommended back in March? And why aren’t patients in recovery already receiving the same screening and evaluation as those in active addiction?

If recent history holds, around 150 Massachusetts residents will have fatally overdosed in the six weeks since I was admitted to the hospital — and countless others will have relapsed or become addicted for the first time. Hospital-wide initiatives and new laws are important. But let’s not ignore common sense protocols that could also save lives.

Seth Mnookin is the director of the MIT Graduate Program in Science Writing and the author of several books, including “The Panic Virus” and “Feeding the Monster.”